Factoid #7
The zebra stripe ribbon for Stiff Person Syndrome refers to training in medical school where they teach future doctors that “when you hear hoofbeats , think of horses, not zebras! “
In other words, if a patient is having severe spasms, think of dystonia, nutritional deficits, multiple sclerosis. Do not even think about it being stiff person syndrome. This delays the diagnostic process unfortunately.
I have an even more rare form of SPS. My variant is called Jerking Stiff Man Syndrome. And there are others!! I have found people all over the world with Stiff Person Syndrome; I just have yet to talk to someone else with my variant. And yes, we want to talk and reach out to others when we are able! I have a Facebook page called Stiff Person Syndrome Support Group USA, if you are interested!
I have found that is true, and with our average of 7 years to be diagnosed, it is really frustrating! (My diagnosis took more than 20 years!!)Originally Posted by Sunshine
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Welcome scribblesdizzles! Great name BTW
Yes, good job on making the FB site. I go to as many SPS sites as possible including FB. Each seems to offer something unique. I read onthe two FB sites :) people do a nice job of supporting one another.
wrong thread
Last edited by stillstANNding; 02-05-2018 at 07:16 PM.
There comes a time when silence is betrayal.- MLK
Factoid #8
Despite its rarity, there is serious research on SPS. In http://www.igliving.com/magazine/art...n-Syndrome.pdf , it talks about very current research in progress on stem cell cures for Stiff Person Syndrome:
Re the researching stem cell transplantation for SPS. Th article says there is “great hope ...being placed on auto-HSCT, with Dr. Georges presenting in May at the American Society for Apheresis 2017 Annual Meeting on “Autologous Hematopoietic Stem Cell Transplantation for Autoimmune Neurologic Diseases: Multiple Sclerosis and Stiff Person’s Syndrome.”
Last edited by Sunshine; 02-06-2018 at 01:37 PM.
Fact #9
Many people with Stiff Person Syndrome experience much less pain and stiffness during a nights sleep.
Fact #10
In general, people with Stiff Person Syndrome “experience more symptoms and falls during times of physical or emotional stress, cold weather, and intercurrent infections.”—https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3335758/
Last edited by Sunshine; 02-09-2018 at 01:07 PM.
Fact #11
There are some rare forms of Stiff Person Syndrome that are due to Paraneoplastic Syndrome. The person has a cancer and might not know it yet. The immune system Ramps up to fight the cancer and goes haywire attacking other organ. In SPS case it’s the central nervous system: brain and spinal cord.
https://www.mayoclinic.org/diseases-...s/syc-20355687
Fact #12
Due to insufficient GABA, emotions such as excitement, anger, happiness etc cause muscle stiffening. The pain from that can cause a person with Stiff Person Syndrome to isolate self from social situations, causing loneliness and depression,
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